Children should not be brought into this world to suffer. That’s what I have
always believed. So when the doctors told me my son had Down’s syndrome, I
knew I was doing the right thing: I had a termination.
I had just got married for the second time, and my husband was desperate for a
baby. We started trying immediately. I thought it was going to be easy: I
was 35, but I already had three children. Getting pregnant was not the
problem.
Early on, I knew something was not right. The sickness was horrendous. I bled,
too. I think that was Mother Nature telling me: “This isn’t going to work.”
I was bedridden with vomiting; I was so poorly, I just wished they would
take me to hospital on the mainland. I’m an artist, and we live on a
Scottish island — everything happens more slowly here, even childbirth. Of
course, all these excuses come into your head. I tried to put feeling ill
down to age, the stress of my work, different genetics this time round. Deep
down, I knew something more serious was going on, but I didn’t want to
vocalise that.
I just told myself: “No, everything’s going to be fine.”
In truth, though, by the time we got round to the blood test, I knew there
wasn’t going to be a baby at the end of it. I was about 16 weeks pregnant by
then. I hadn’t had a scan, but they offered me this test because I was an
older mother. I wasn’t surprised when it showed there was something wrong.
My husband, James, and I didn’t discuss it with the children at that point,
but I already knew, in my heart, that, if there was going to be a problem
with the baby, it wasn’t fair to bring him into our family. And I was
certain James wouldn’t have coped with a disabled child.
A good friend of mine has a little girl with Down’s syndrome. She’s the most
gorgeous child you’ll ever meet. But any decision I made was for us,
obviously, and our family; not for anyone else. And there is still
tremendous guilt when you make a decision that will take your baby away. We
discovered that Kit had Down’s syndrome for sure after the amniocentesis, at
18 weeks. The results were 100% positive. He also had a serious heart
condition. After that, it all happened very quickly. We were on a flight to
Aberdeen the next day. There was no real discussion, to be perfectly honest.
It was something I had to do. I could have had counselling at the hospital
if I’d wanted to, but I just knew I was doing the right thing. On the ward,
the nurses and midwives were angels — unbelievably lovely. There was no
judgment. I was given a tablet to stop the baby’s heart, then medication to
induce labour. I had to give birth to Kit naturally. A C-section is not an
option on the NHS.
My labour wasn’t excessively long, but it was the worst pain by far, even
after three other children. Kit was tiny, yet giving birth to a baby at only
19 weeks — there’s nothing I could describe that was as bad. I had every
intervention: morphine, gas and air, painkillers. I kept saying: “Give me
more, give me more.” Possibly it was an emotional response to what was
happening, because I was losing a baby I didn’t truly want to let go of, and
my body was not ready for it. When Kit was born, he was taken away, bathed
and dressed. There are people in Aberdeen who knit clothes for premature
babies, so he was wearing these tiny things, and was put in a moses basket
with blankets and a teddy. He was perfect — but I needed to see for myself,
so I undressed him and checked all his bits and pieces, just as you would
with a normal baby. When my husband picked him up, I remember saying, “Hold
him properly; don’t let his head drop,” which was totally irrational,
because nothing would damage him now, but I think that’s nature taking over
— you still have a baby and you must look after him.
We were allowed to keep him with us overnight. The midwives popped in every
hour or so, to make sure we were okay, and the chaplain came to visit and
give Kit a blessing. And we just held him — we spent the whole time holding
him and looking after him. The nurses took photographs; they did his
footprints, his handprints, they measured him. I wanted to know who he was,
because he was still my son.
He was taken to the chapel and we didn’t see him again until he was in his
coffin, at the funeral. We had been offered a postmortem, but we declined.
We didn’t take Kit home to bury him, because I thought I’d have to carry the
coffin on the plane. Silly, really. So his grave is in the city. My husband
took Kit’s body from the car to the grave. It was a pouring day of rain,
absolutely awful. I think it was probably my first funeral ever. He’s buried
next to the stadium. I think that’s just the perfect place for a little boy
to be, watching the football.
The older children were devastated that we had lost the baby. But part of my
thinking had been that I wasn’t going to be here for ever, and somebody in
the future would have to be responsible for this disabled child. I didn’t
think it was fair to put that pressure on the other children. I’ve felt
guilty, of course; not because I made the wrong decision, but guilty that I
didn’t have a little boy I could have loved. He would have been absolutely
adored. But it was the long-term effects I was thinking of. Now I know, in
my heart, I did the right thing. I’m more at peace with myself, but it’s
taken a while to get there. You have to get on with living for the children
you have. They are my priority.
My husband and I have divorced since we lost Kit. But it wasn’t about the baby
— we had a more fundamental marriage problem. The severity of Kit’s Down’s
syndrome would seriously have affected the quality of his life. And I don’t
think it’s fair to give birth to a child knowing they’ll suffer. My son
wasn’t supposed to be here; that’s what I believe. If there is a God, he’s
chosen to have my child with him. And, at some point, we’ll be together
again.
Healthtalkonline enables you to share in other people’s experiences of
illness and to get reliable information about conditions, treatment choices
and support: healthtalkonline.org.
Antenatal Results and Choices (ARC) is a charity that provides support and
information for expectant and bereaved parents throughout the antenatal
screening and testing process: 020 7631 0285, arc-uk.org.
Down’s Syndrome Association: 0845 230 0372, downs-syndrome.org.uk
"OUR BABY HAD DOWN'S — AND WE KEPT HIME"
By Sal Hamlyn
"We discovered at our 18-week scan that Isaac had serious problems with
his heart, but we didn’t find out that he had Down’s syndrome until I had an
amniocentesis at 22 weeks. That confirmed it. The doctors told us that his
condition was incompatible with life. It’s such a horrible phrase. They
assumed that I’d have a termination — 92% of women in my position do. They
kept on pushing it and pushing it as an option. There weren’t many stories
of hope. They just couldn’t tell us anything hugely positive.We did
fleetingly consider ending the pregnancy, but Isaac was already kicking away
by then. He felt like someone who was meant to be born — already part of our
family.
"I’m a Christian, but in some ways that made the choice harder for me.
Throughout, though, our faith has been a comfort. I don’t know how we’d have
got through without it. Back then, we didn’t know anyone with Down’s — they
were just people you saw around. But my husband and I felt the same way
about keeping the baby; he was our son. It was what we wanted.
"We knew it would be hard: Isaac had problems with his heart and his
bowels, along with all the other issues associated with Down’s, but we chose
a surgeon we knew we could trust to operate on him.
"I can’t pretend the weeks leading up to his birth were easy. There were
mixed emotions — but we always had hope. We had tremendous support from
family and friends, and from the Down’s Syndrome Association.
"Isaac had open-heart surgery when he was a few weeks old. He’s eight
now, and we’ve never looked back.
"He’s enriched our lives so much. He’s taught me what’s important:
gentleness, kindness, patience and humour. He makes everyone feel better
about themselves.
"I thought what happened to us was the end of the world — but it was the
start of a whole new one. Life’s never dull with Isaac."
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